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Re: Just diagnosed
Aug 15, 2007
I don't know where to begin... I had a baby 14 years ago after 4 years of trying. It was a planned C-section, Katherine, my Daughter, didn't cry when she was born and was taken to ICU for Oxygen. We were told her level was low, I did not get to hold her or barely see her. My Husband went with her.I was heavily sedated for 2 days or so. Everything seemed more or less okay, she was taken off of Oxygen and we carried on with our Dream. Didn't look back. Nothing was said. Feeding was a problem. I found if I fed Kat and laid her down right away EVERYTHING would flow out her mouth. Thank God I always laid her on her side! I told her Doctor who said a flap on her stomach might not be completely closed, so I held her upright after each feeding for at least a half an hour. I also found her to be constipated allot. Doctor said suppositories. At 9 months she was evaluated for vision problems. When tired, she would fix her gaze UPWARDS, and lower her chin, to focus her gaze. They found no physical reason for this and said "lazy eyes", they may strengthen with time. Around 3 yrs. old, I was concerned about speech. Kat seemed to not pronuciate clearly. Her speech seemed slurred. We had basic hearing tests done and she was deemed clear. All this while she was somewhat, though not drasticly, delayed. She was always shaky on her feet. Bad balance. Fell down alot. Made me VERY nervous on playstructures and such.Took her to her Doctor when she was 4 regarding her slurred speech. He said it was likely due to being tongue-tied and offered to snip her tongue. We declined. At 5 we took her to Childrens Hospital of Eastern Ontario, concerned about her balance. The other Children had taken to calling her "Stumblina". We waited something like 6 months for this apt., the Doctor asked a few questions, watched her do a couple of physical things and said " She's no ballerina, but not so bad", all clear.

To shorten what could be a NOVEL, after this point, and over the next 6 years, we saw another 2 Neurologists, and 1 new Pediatrician (who WITHHELD MRI RESULTS showing Atrophy of the Vermis of the Cerebellum, with Enlarged Fissures because at that point, with no HARD signs at the age of 11, she feared my Daughters Symptoms were all in MY head.)

NOW, at 14, Katherine HAS some HARD signs they have been waitng for. She was just diagnosised with 15 degree functional Scoliosis, fallen arches, a ranking in the 5th percentile for understanding spoken paragraphs...AND , I beleive, she has a temperture regulation dysfunction, as well. We had NO idea Katherine had a problem of this kind so we treated her normal, as did the Schools. Part of my difficulty in getting a diagnosis was the Teachers. Earlier in the day, Kat functions better. It is about 3 or 4 that she wears out. They would rarely see it. Until Puberty hit. Then Katherine REALLY tired. She had a 20 min. walk to School, each way. I don't drive but would call Taxis whenever I could afford it. She would come in the door from School, drop to the floor, vomit, headache, confused and unable to talk. I would undress her, cool her off, and tell the doctors. They were, or SEEMED, perplexed. They saw it as a Headache disorder...NOW I think it was Heat Stroke! The first time it happened she was 5. Halloween, after Trick or Treating. I felt it was some kind of Excersisce Intolerance and FOUGHT to have her out of Gym, fearful of what could happen, we had NO idea why this was happening. They fought back. Grade 7 she was very weak, started passing out, had muscle twitches in her hand and numbness of her upper lip. ANYONE know if this might have been a seizure? I brought her to CHEO, who referred me back to the first Neurologist I saw. He pretty much kicked us out of his office saying, " there's NOTHING Neurological going on here!"...

Now I have a BETTER Doctor, who ordered the mRI that shows the damage. The Report notes this finding was made previously, BUT no one told us.

My Daughter and my Family has suffered for 14 years WAITING for a diagnosis. I thank GOD, we had a pool. Katherine spent morning to night in the pool. Just loved it. From 5 to 11. And Martial Arts were offered at our School, she was enrolled for 3 years.

I have been holding this in for YEARS and thank you all for being here.





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